Glioblastoma Multiforme (grade 4)

2

Comments

  • Jenniferclay
    Jenniferclay Member Posts: 2
    My experience with Glioblastoma Grade 4
    I was a Owner/Hairdresser for 20 yrs. I owned my own salon for 18 yrs., when in the fall of
    2005, I started having daily migrains, In Feb. 2006 I went to the ER and was immediately flown to Bristol, TN for surgery to remove the preasure on my brain from an astrocytoma grade 2. I took an at chemo pill called temador and no rad. That was when my life as I knew it was over, I had to sell my salon, I had a 12 yr. old,and had been married for 22 yrs. One and half years later I had another surgury at UVA Charollettsville,VA, Dr. Shciff and Shaffery are truely the best Neouro. Dr. and Surguon there is. They did my surgurey in Jan.2008, Which was suppose to be the last of the astrocytoma, BUT it came out to be Glioblastoma Grade 4.
    Right away I started back on my temador and pinpoint radiaions for 42 days. I know what you mean about these websites. They can be very disappointing. I think the best info you can get on any illness, Is by someone who has been through it. God Bless. Jen
  • megryanj
    megryanj Member Posts: 2
    GBM
    My husband Arron, 35 yrs old, was dx'd May 29 2008 following an initial surgery in the left frontal lobe. A second surgery on May 31 2008 the surgeon was able to remove ALL 3 tumors.Arron completed IMRT radiation/150mg temodar chemo on Aug 4th and just restarted temodar450mg 2 nights ago. So far so good. 1st MRI last week came back "better than expected"(praise God!!)Arron is down to 1mg per day of Decadron and we are receiving a treatment plan/supplements this afternoon from a Homeopathic Dr. We are excited about this. She has advised ALL organic foods and Mass amounts of fresh vegetables. We have found juicing is the most efficient way to get the vegetables needed as they were not Arrons favorite prior to dx. We just take a 4-6oz "shot" of the concoction each day. We have 3 children ages 8, 13, and 16 and have only told them that daddy has cancer. I am not ready to tell them any more than that because I have so much hope and faith that we will have him more than 1-2 yrs. As soon as we receive our treatment plan today from the Homeopathic Dr. I will send. Good Luck and God Bless!!!Michelle @[email protected].com
  • buffyt
    buffyt Member Posts: 2
    megryanj said:

    GBM
    My husband Arron, 35 yrs old, was dx'd May 29 2008 following an initial surgery in the left frontal lobe. A second surgery on May 31 2008 the surgeon was able to remove ALL 3 tumors.Arron completed IMRT radiation/150mg temodar chemo on Aug 4th and just restarted temodar450mg 2 nights ago. So far so good. 1st MRI last week came back "better than expected"(praise God!!)Arron is down to 1mg per day of Decadron and we are receiving a treatment plan/supplements this afternoon from a Homeopathic Dr. We are excited about this. She has advised ALL organic foods and Mass amounts of fresh vegetables. We have found juicing is the most efficient way to get the vegetables needed as they were not Arrons favorite prior to dx. We just take a 4-6oz "shot" of the concoction each day. We have 3 children ages 8, 13, and 16 and have only told them that daddy has cancer. I am not ready to tell them any more than that because I have so much hope and faith that we will have him more than 1-2 yrs. As soon as we receive our treatment plan today from the Homeopathic Dr. I will send. Good Luck and God Bless!!!Michelle @[email protected].com

    GBM
    My husband was dx'd on July 9 2008 and they operated and took as much of the tumor out as they could. He had radiation and is still on 2mg decadron a day they say if they take him off it he would be in big trouble. He sleeps most of time and only gets up to eat. He doesn't talk much anymore and is very confused and doesn't understand very much. They won't give him Chemo. Because they say there is no proof that it helps the elderly he is 72yrs.old
    and it would only make him sicker. I would be interested in Homeopathic remedy. Like your husband he does not like vegetables very much. His tumor is on the left side of his head which is where the language memory is. He can't read anymore because he doesn't see the whole letter just a part of it. It is hard to watch someone go through this terrible illness.
    Good luck to you and your husband. [email protected]

    All the best
    Nancy
  • 2006 mainewife
    2006 mainewife Member Posts: 3
    buffyt said:

    GBM
    My husband was dx'd on July 9 2008 and they operated and took as much of the tumor out as they could. He had radiation and is still on 2mg decadron a day they say if they take him off it he would be in big trouble. He sleeps most of time and only gets up to eat. He doesn't talk much anymore and is very confused and doesn't understand very much. They won't give him Chemo. Because they say there is no proof that it helps the elderly he is 72yrs.old
    and it would only make him sicker. I would be interested in Homeopathic remedy. Like your husband he does not like vegetables very much. His tumor is on the left side of his head which is where the language memory is. He can't read anymore because he doesn't see the whole letter just a part of it. It is hard to watch someone go through this terrible illness.
    Good luck to you and your husband. [email protected]

    All the best
    Nancy

    Brain tumors
    My heart goes out to you I know what you are going through. My husband was dx'd March 27 2007 he was also operated and they did not get it all he had radiation and was on chemo the pill form for 6 months came off chemo Dec 8th 2007 and was fine up till Sept 2008 he was having a hard time talking seeing and was confused alot he went for a MRI as planed every 3 months and that came back not good he was to have a biopsy Oct7 2008 but that was canceled that day they did another MRI the day before and found that it was cancer and said there was two more he has three now not good one is on his left side also they sent him home he has gone down hill since then he also can not read he was a reader and is in a wheel chair now. Yes it is a terrible illness and hard to watch someone go through this . Just stay strong I know it is hard. Good luck [email protected]

    Hang In there
    Susan
  • buffyt
    buffyt Member Posts: 2

    Brain tumors
    My heart goes out to you I know what you are going through. My husband was dx'd March 27 2007 he was also operated and they did not get it all he had radiation and was on chemo the pill form for 6 months came off chemo Dec 8th 2007 and was fine up till Sept 2008 he was having a hard time talking seeing and was confused alot he went for a MRI as planed every 3 months and that came back not good he was to have a biopsy Oct7 2008 but that was canceled that day they did another MRI the day before and found that it was cancer and said there was two more he has three now not good one is on his left side also they sent him home he has gone down hill since then he also can not read he was a reader and is in a wheel chair now. Yes it is a terrible illness and hard to watch someone go through this . Just stay strong I know it is hard. Good luck [email protected]

    Hang In there
    Susan

    brain tumors
    Hi Susan,

    Thank you for your words of encouragement. Some days it's hard to be strong but what choice do we have. I feel that the doctor's have already given up in him. I'm meeting with his nurse on Mon. to see where we can go from here. He's scheduled for a MRI in Jan.'09. I guess we'll just have to wait and see what it shows. I find the doctor's don't seem to want to tell me to much in front of him and I also don't think he understands what is going on.

    Talk to you later
    Nancy
  • v724510
    v724510 Member Posts: 1
    Just Diagnosed 3 weeks ago
    My dad was diagnosed with Grade 4 Glioblastoma Multiforme 3 weeks ago. Its been a difficult time for the whole family. He had an operation and the doctors were able to remove 99% of the tumor. He is going to start Chemo and Radiation next week. He is 72 years old. I would really like to get in touch with some survivors. As well as people with experience with the cancer. The whole family has really come together but we are kind of at a loss at what to expect and are at the mercy of the doctors. Not that thats a bad thing but I know that there are successful options for him that the medical community hasn't excepted. Feel free to private message me or respond on the forum. Thanks
  • Matty
    Matty Member Posts: 21
    v724510 said:

    Just Diagnosed 3 weeks ago
    My dad was diagnosed with Grade 4 Glioblastoma Multiforme 3 weeks ago. Its been a difficult time for the whole family. He had an operation and the doctors were able to remove 99% of the tumor. He is going to start Chemo and Radiation next week. He is 72 years old. I would really like to get in touch with some survivors. As well as people with experience with the cancer. The whole family has really come together but we are kind of at a loss at what to expect and are at the mercy of the doctors. Not that thats a bad thing but I know that there are successful options for him that the medical community hasn't excepted. Feel free to private message me or respond on the forum. Thanks

    Hope
    The first important part of recovery is to remove as much of the tumor as possible. It sounds
    good that 99% was removed. I had a malignant brain tumor(ependymoma) in childhood, stage 4 with 95% removed during surgery.I had radiation to half of my brain. Diagnosed at age 4 and cancer survivor since, I am now 47 years old. Lots of love,

    I could only begin to know what you are going through.
  • JackiesGirl
    JackiesGirl Member Posts: 2
    buffyt said:

    brain tumors
    Hi Susan,

    Thank you for your words of encouragement. Some days it's hard to be strong but what choice do we have. I feel that the doctor's have already given up in him. I'm meeting with his nurse on Mon. to see where we can go from here. He's scheduled for a MRI in Jan.'09. I guess we'll just have to wait and see what it shows. I find the doctor's don't seem to want to tell me to much in front of him and I also don't think he understands what is going on.

    Talk to you later
    Nancy

    brain tumors
    My mother is 70 years old and was diagnoised with Glioblastoma brain tumor on Dec. 13, 2008. They did surgery on the Dec.17, and two weeks later she started Temodar (low dosage) and also began radiation. She did 35 radiation treatments. In the beginning of March, she started to become weak, confused, having trouble walking, etc..They took her off of her steroids and the next week, she could hardly move. Then she started acting strang. I called the doctor and he said to bring her in the next day for an MRI. While my mom, me, and my stepdad were in the waiting room, waiting for her to be called back for her MRI, she kept telling me she felt odd, and I tried to comfort her and all of a sudden, she had a full blown grand mal seizure right in my arms with me screaming and crying for my stepdad to get help. They took her immediately to the ER and found out that not only had she had a seizure, but her potassium was very low, she was 2 units low on blood and had to have a transfusion, and her leg had a blood clot that went all the way from the groin to her toes.She was in the hospital for a week, and while there, the oncologist told us that she only had 4 to 6 weeks left to live. She had to be taken home in an ambulance and is now having to use a hospital bed, a catheter, and is on oxygen.While in the hospital, they did the MRI and found that the tumor which had originally been 95% removed had grown back completely. So the radiation and chemotherapy did no good at all. We are now looking into taking her to the MD Anderson Cancer Clinic in Houston
  • mebrumit
    mebrumit Member Posts: 1
    Matty said:

    Hope
    The first important part of recovery is to remove as much of the tumor as possible. It sounds
    good that 99% was removed. I had a malignant brain tumor(ependymoma) in childhood, stage 4 with 95% removed during surgery.I had radiation to half of my brain. Diagnosed at age 4 and cancer survivor since, I am now 47 years old. Lots of love,

    I could only begin to know what you are going through.

    Glioblastoma Multiforme
    My brother was diagnosed with a high grade glioblastoma on November 27, 2009 at the age of 44. He had surgery the day after Thanksgiving. He had 3 tumors, two of which were removed, and a third that was too deep to get to. He then completed radiation and then was prescribed a chemo drug called Temodar. He responded well to the treatment, but in early March, the headaches returned, he became more confused and lost a lot of balance. The tumor that was left had grown bigger and two others grew back in the same area the first two were removed from. We saw a brain tumor specialist this wee at Emory in Atlanta, GA and he scheduled a second surgery for next week. Does anyone have experience with a second surgery and what happens afterward? Thanks.
  • sweber04
    sweber04 Member Posts: 1
    mebrumit said:

    Glioblastoma Multiforme
    My brother was diagnosed with a high grade glioblastoma on November 27, 2009 at the age of 44. He had surgery the day after Thanksgiving. He had 3 tumors, two of which were removed, and a third that was too deep to get to. He then completed radiation and then was prescribed a chemo drug called Temodar. He responded well to the treatment, but in early March, the headaches returned, he became more confused and lost a lot of balance. The tumor that was left had grown bigger and two others grew back in the same area the first two were removed from. We saw a brain tumor specialist this wee at Emory in Atlanta, GA and he scheduled a second surgery for next week. Does anyone have experience with a second surgery and what happens afterward? Thanks.

    Glioblastoma
    Hi,.
    My sister, age 56, was recently diagnosed with grade 4 Glioblastoma. Hers is inoperable because of its location. She started radiation and Temodar this past Wed. and is not doing well. I just left her at the ER due to the inability to feel her legs and pain in the same area. They took a CT scan and it seems that the tumor has grown since it was first diagnosed one month ago. They are moving her to another larger hospital tonight because they are concerned with how fast it has grown. For us, things are not looking that good. Good luck with your brother.
  • kempenl
    kempenl Member Posts: 13
    delmedico said:

    Hi Nancy,my brother was diagnosed the same as yours. They found the tumor in November and Jim has completed radiation. He has had one surgery and has decided against another. No chemo has been tried. He is getting weaker and is on morphine for pain. We don't know what else to do. His faith in the Lord sustains him. Sorry to hear about your brother. I would be happy to hear from you, Dave.

    No chemo
    Can you please tell us why he chose no chemo? Can you tell me how old he is?
    thank you, kempenl
  • momatabor
    momatabor Member Posts: 10
    GBM 4
    hi my brother has gbm stage 4 he is two years out of treatment and is doing great, he takes temadar every month for 5 days, and multi meds for seizures, but it seems to control them very well. he had surgery & rad but they could not remove all the tumor and it has not grown for 2 years thank god the only advice i can give is to be there for him and i know its not easy but keep a since of humor and give thanks for each and every day u have gob bless you all,you can read more about my brother at gary43 and if i can help in any way please contact me god bless
  • This comment has been removed by the Moderator
  • Toshy
    Toshy Member Posts: 24
    30+ years!
    I was diagnosed when I was 7 in 1977. It was in operable as it was on my brainstem. I had radiation treatments in late 70's, chemo in early 80's. Acouple of years after stopping chemo. I was told the tumor no longer showed up on the CT scan. Later MRIs continued to be clear.

    I was told later I had been given 6 months to live and within a month or two it was 6 weeks... Although mine has been a hard life I'd say, it's been a very happy one!

    I was diagnosised with an malignant astrocytoma but now the Cleveland Clinic doctor I've just seen is guessing it was actually a GBM.

    If you are interested in more details about my story see "my story" in my EXPRESSIONS.
  • Sceerd
    Sceerd Member Posts: 8

    i was diag'd 6/3/05 with gbm4.had a 7cm tumor resected on 6/06/05,said they got most all of it.i took temodar and full radiation series.had recurrance in nov.or at least thats when i had the mri that indicated it.i am now on cpt-11 and avastin,applied thru IV drips every other week.a recent MRI shows my new tumor shrunk by half in one months treatment..only four sessions.i continue to take this same treatment.original tumor was in upper right frontal and i had no deficits..only symptom was a headache which made my wife insist i go to the E.R.(thank God) i later had a seizure on thanksgiving day when they tried to take me off of dilantin.i stay on dilantin now at 500 mg a day.no further seizures since that one.i also took zofran as anti-nausea with the temodar,and still do with my current meds.Good luck to your and your brother and God bless.feel free to email me if you have any specific questions.

    Avastin with CPT-11
    I have a recurrent Gliosarcoma in my right frontal lobe and am planning a second full resection including implantation of the Gliodel Wafers. After this surgery my plan is to take Avastin with CPT-11. So my question is how are you doing? Has your treatment worked out?
    please let me know, I could use the encouraging news.
  • Sceerd
    Sceerd Member Posts: 8
    Sceerd said:

    Avastin with CPT-11
    I have a recurrent Gliosarcoma in my right frontal lobe and am planning a second full resection including implantation of the Gliodel Wafers. After this surgery my plan is to take Avastin with CPT-11. So my question is how are you doing? Has your treatment worked out?
    please let me know, I could use the encouraging news.

    Update
    I'm still here!! I was put on a Clinical Trial with Vorinostat, Avastin, and CPT-11. However, I was getting really sick and the cause was determined to be CPT-11 which was dropped and now I'm tolerating just fine. All my MRI's have been clean and life is good. I'm totally expecting a treatment failure eventually but I have a plan for that. Also I'm confident there is or will be a durable treatment in the very near future. Have a look at the Stem Cell Vaccines like the one from Immunocellular ICT-121 looks very promising.In the last year I've learned so much, bonded with my estranged family, and got married. My whole lifestyle has changed and I have a completely new perspective.I am much more food and nutrition conscience than I use to be and am enjoying life in a completely different way. I have no expectation that I'm going to beat this thing but at the very least the time I've had and will have is worth most of the life I had before. Having said that I am optimistic things will work out.
  • stayingcalm
    stayingcalm Member Posts: 650
    Sceerd said:

    Update
    I'm still here!! I was put on a Clinical Trial with Vorinostat, Avastin, and CPT-11. However, I was getting really sick and the cause was determined to be CPT-11 which was dropped and now I'm tolerating just fine. All my MRI's have been clean and life is good. I'm totally expecting a treatment failure eventually but I have a plan for that. Also I'm confident there is or will be a durable treatment in the very near future. Have a look at the Stem Cell Vaccines like the one from Immunocellular ICT-121 looks very promising.In the last year I've learned so much, bonded with my estranged family, and got married. My whole lifestyle has changed and I have a completely new perspective.I am much more food and nutrition conscience than I use to be and am enjoying life in a completely different way. I have no expectation that I'm going to beat this thing but at the very least the time I've had and will have is worth most of the life I had before. Having said that I am optimistic things will work out.

    Congratulations!
    That's very good news, sceerd, and just possibly you will beat this thing - it sounds like you've had some great life changes ;)
    You ought to post the good news where it will get seen, though - this is a really old thread and it's hard to find anything in it.
    stayingcalm
  • mardee
    mardee Member Posts: 2
    fcheshir said:

    My mother (54 years old) also diagonsed with glioblastoma. From what I have seen there is not much hope... BUT some people have survived this and why not her... anyway. I have been doing a ton of research already her tumor was just removed last thursday.. Oct. 2, 2003 I have found a website that "claims" to have found some sort of a drug or something that caused the overall body voltage to drop 20% and that cancer cells can not live when the bodies electical current drops this low. IE. Kills all of the cancer cells. Here is the site. Please let me know if anyone has heard of this and if so how effective. http://www.holisticcancersolutions.com/braintumorsarticle.htm
    You can email me direct at [email protected]

    Thank you!
    Fred

    Hi Fred,
    Your post sounds

    Hi Fred,
    Your post sounds interesting...did you ever find out any more about the treatment that lowers the body's voltage? Appreciate any info as I was just diagnosed with a grade iv gbm. Thanks, Bob
  • RLR
    RLR Member Posts: 36
    Sceerd said:

    Avastin with CPT-11
    I have a recurrent Gliosarcoma in my right frontal lobe and am planning a second full resection including implantation of the Gliodel Wafers. After this surgery my plan is to take Avastin with CPT-11. So my question is how are you doing? Has your treatment worked out?
    please let me know, I could use the encouraging news.

    Glio wafers
    I have heard so many bad things about the wafers but I am here to tell you I had them at the time of my surgery for GBM4 on Jan 13,2009 and have been doing very well every since that time.I had a 7 cm tumor debulked at that time. ( it grew from 2.5 cm to 7 cm in just 3 1/2 weeks) After surgery I had 6 weeks of radiation and have now been on Temadar for 1 1/2 years. The doctors all say I look great and am tolerating the chemo very well.I have never had a clean MRI but the Dr. says it has not grown and that is good news. I am on a chemo schedule of 5 days on and 3 weeks off. I truely believe that this thing is going to be something that I can live with for many years to come.
    Take care and good luck, and God bless you.
  • mpotter427
    mpotter427 Member Posts: 2
    Sceerd said:

    Update
    I'm still here!! I was put on a Clinical Trial with Vorinostat, Avastin, and CPT-11. However, I was getting really sick and the cause was determined to be CPT-11 which was dropped and now I'm tolerating just fine. All my MRI's have been clean and life is good. I'm totally expecting a treatment failure eventually but I have a plan for that. Also I'm confident there is or will be a durable treatment in the very near future. Have a look at the Stem Cell Vaccines like the one from Immunocellular ICT-121 looks very promising.In the last year I've learned so much, bonded with my estranged family, and got married. My whole lifestyle has changed and I have a completely new perspective.I am much more food and nutrition conscience than I use to be and am enjoying life in a completely different way. I have no expectation that I'm going to beat this thing but at the very least the time I've had and will have is worth most of the life I had before. Having said that I am optimistic things will work out.

    Your Update
    Thank you so much for your update. It is the only current and positive feedback I have found online. I recently was diagnosed with GBM4 and had surgery within a week. Now am on chemo and radiation treatments. This whole thing has been surreal to me and my family. The only good thing being that I too have been reconnected with estranged family members. Have also decided to make huge lifestyle change in regards to work and living arrangements. My husband & I are also becoming nutritionally conscious. Anything it takes to get through and past this. I am not long into treatment and have had no follow up MRI scans but am hopeful that by end of treatment it will be good news. We will only focus on the positive in our household now. No negative input allowed!!!! Hope everything continues to improve for you. Catch up soon....